The Role of AAC for Communication: Real Stories from Home, the Community, and Beyond
I learned that Kevin had experienced a stroke, had left-side weakness, and had difficulty finding the right words to complete his thoughts. In addition, he had difficulty producing speech sounds correctly and often became frustrated when he couldn’t tell you what he wanted.
He was pleasant to work with in speech therapy and was eager to try anything to improve his communication. He had always been active in his community, and he was frustrated that it was getting harder for others to understand him.
I also learned that his primary Speech-Language Pathologist was evaluating a variety of speech devices and apps for him. Unbeknownst to me at the time, that evaluation included APP2Speak. The next month, I was once again scheduled to work at the outpatient clinic, and I was pleasantly surprised to see Kevin on my schedule again that day.
He walked into the therapy office with an ear-to-ear grin, clumsily set down his backpack, and reached in to pull out an iPad.
Smiling and giggling, he turned it on and APP2Speak appeared on his screen. He tapped a photo of a beer mug and the app said, “Beer me!”
He then selected another photo of his face, and the app said, “Honey, I have goobers in my moustache. Can you help me clean it off?” He tapped another button and the app said, “Honey, can you help me trim my beard?”
Finally, he selected another photo and the app said, “Honey, I love you.”
He gave me a big smile and laughed. By this time, of course, I had tears streaming down my face because Kevin was demonstrating the power of augmentative and alternative communication (AAC) for communication and connection, something I’ve championed for years.
Communication at home is often made up of hundreds of little moments such as these, moments that most people take for granted. And now, with APP2Speak, Kevin and his wife could once again enjoy these moments.
It was delightful to see him and his wife working together to customize the app for his conversational needs. He then gave me a big hug and said, “Thank you.”
And let’s not forget that “Beer me” message. After his stroke, returning to his neighborhood tavern wasn’t just about the beer for Kevin. It was about being able to joke with his friends, place his own order, and feel like himself again.
That’s the thing about AAC. Most people don’t dream about giving speeches in front of big crowds or anything dramatic. We just want to tell our spouses we love them, joke with our friends, order lunch (or a beer), ask for help when we need it, and stay connected to the people around us.
And that’s what AAC should be all about—an integral part of everyday life long after therapy ends.
Everyday Life Looks Different for Everyone
Communication challenges come in many different forms, and different diagnoses create different challenges.
In addition, different people have different goals.
For some people who have lost speech due to a stroke or head and neck cancer, it’s about being able to communicate effectively during recovery as they work to regain some or all of the speech they’ve lost.
For others, especially those with progressive, degenerative diseases such as ALS, it’s about being able to continue to communicate as their ability to speak for themselves slowly disappears.
But underneath all those differences is one common desire:
To continue participating in life.
And whatever form that takes, AAC can play a role.
Take “Cheryl,” (not her real name) for instance…
Cheryl’s Story: Finding the Right AAC Fit for Everyday Life
In last month’s blog post, I shared Cheryl’s story. She was another patient I worked with periodically over several years. She was in her 60s at the time I met her and living in an assisted living community.
Like Kevin in the story above, Cheryl had suffered a stroke that had limited her ability to speak. What was different in Cheryl’s case was that she had been provided with a rather complex and bulky AAC device at the time of her stroke, several years before I met her.
The device worked fine, but Cheryl made it very clear to me that she wasn’t excited about using it—she simply tolerated it because it was what she had been given to use.
A few years after first meeting Cheryl, she once again became part of my caseload. Even though a few years had passed, not much had changed. She still used the bulky device she had first been given, and she still clearly didn’t enjoy using it.
Finally, earlier this year, I was once again assigned to work with Cheryl. This was now seven years after her stroke, and she still used her original AAC system.
What was different this time, though, is that her daughter was taking an active role in exploring other communication options for her. When her daughter showed Cheryl a phone-based option (which happened to be APP2Speak), Cheryl’s face lit up immediately and she nodded enthusiastically.
It was clear that Cheryl felt the app would fit her lifestyle much better than her old, bulky device. They purchased the app right away and went to work, customizing it to include Cheryl’s favorite foods, family photos, and the activities she enjoys.
She now has her phone attached to her wheelchair using a phone holder, meaning her communication system is always in reach when she’s on the go. She uses it to order food in the dining room and while participating in daily interactions.
Bottom line, it has become part of her daily life in a way that her old device never did.
Sure, her old device worked and allowed her to communicate with others, but it’s not just about whether the technology works. It’s also about how well it fits into one’s daily routine.
And today’s phone-based AAC apps are an excellent option for many people who don’t enjoy lugging around a bulky device.
Helen’s Story: When Life Changes, Communication Should Change, Too
Not everyone’s communication changes suddenly, like it did for Kevin and Cheryl. Some people gradually lose speech over a period time.
That’s what happened for Helen, who was diagnosed with Bulbar ALS, causing her to lose her speech gradually.
Helen, like Cheryl, was loaned a big, heavy speech device to use when she was first diagnosed. But (also like Cheryl), she found that it didn’t really fit her lifestyle because it was so inconvenient.
When she found APP2Speak, she was overjoyed. Here’s what she shared with me:
“As a person with Bulbar ALS, my ability to speak is virtually gone. Since APP2Speak software works on my iPad, it fits in my purse. The ‘text-to-speech’ feature allows me to converse with anyone. It makes living with ALS much easier.”
Again, the key takeaway from Helen’s story is that the best AAC technology isn’t always the most powerful. It’s the tech that allows you to participate in everyday life. And sometimes, as in Helen’s case, that means that the best communication solution is the one that goes wherever you go.
Bob and Wayne’s Story: Preparing Before Communication Is Lost
In Kevin and Cheryl’s case, communication was lost in an instant, as a result of a stroke. In Helen’s case, she lost her ability to speak more gradually, but she didn’t really have the ability to plan her response until the process had already begun.
But sometimes communication planning can begin before speech is lost. That was the case for Bob.
Bob was diagnosed with throat cancer, and as a result, he knew in advance that the laryngectomy he needed to save his life was also going to take his voice.
Luckily for Bob, his friend Wayne researched options for him and found APP2Speak. After conferring with Bob, they decided to purchase the app and install it on Bob’s phone prior to the surgery.
This proactive approach didn’t end there. They took the time to customize the app for Bob’s use, and he practiced using it before surgery.
As a result, when Bob woke up after surgery, he was able to communicate with his nurses immediately. The nurses were so impressed by this that they asked him all about the app.
Bob continues using APP2Speak every day at home, as well as outside the home.
The point is that preparation gave Bob confidence during one of the most difficult experiences of his life and allowed him to continue living that life without missing a beat.
Different Stories, One Common Thread
In this post, I’ve shared with you the stories of four people who lost their ability to speak for one reason or another.
Their situations were all different, as were their goals.
- Kevin wanted to be able to share personal moments with his wife again and enjoy time spent with his friends.
- Cheryl wanted to be able to have everyday conversations in her assisted living facility without lugging an ungainly large device around with her.
- Helen wanted to carry her method of communication in her purse.
- Bob wanted to wake up after surgery and be able to communicate right away.
Different diagnoses. Different challenges.
But they all had the same overall purpose: Staying connected with others and continuing to engage in everyday life.
AAC Is About Living, Not Just Therapy
Here’s what I hope you take away from the stories I’ve shared in this post: Even though, in my role as a Speech Language Pathologist, I provide therapy to people who have lost their ability to speak, I know that communication must go on beyond therapy.
The most important communication takes place:
- Around the dinner table
- In restaurants
- At doctor’s appointments
- While shopping
- While visiting family
- While laughing with friends
- When saying “I love you” to your significant other.
In other words, during everyday life. That’s where communication really matters.
And that’s the most important use of AAC—to facilitate those everyday communications.
Helping Adults Stay Connected—Wherever Life Takes Them
In this post, you’ve heard the stories of four people. They had different diagnoses and different prognoses.
But even though their journeys differed, they all had one common goal: staying connected.
Think about Kevin, using APP2Speak to say, “Beer me!”
The goal wasn’t just to be able to say two words. It was getting back to a familiar place, with familiar people, and feeling like himself again.
That’s why I always say that the best AAC solution is the one that fits naturally into a person’s everyday life.
And that’s why I created APP2Speak. My mission is to help adults communicate confidently at home, in their communities, and wherever life takes them.
To learn more about APP2Speak and whether it’s the right choice for you or your loved one, just reach out to connect. I can set up a free demonstration and answer any questions you have.